I've been on the same prescription for a custom made, class 2 flat knit, thigh high stocking since 2019. My leg was measured just 3 months ago and my nurse confirmed my leg is stable and said I could continue with my usual prescription - a decision I was happy with.
Up to spring 2021 I've had 8 stockings on said prescription and they have all been virtually identical and have controlled my swelling very well. I was very disappointed when I received my autumn order of stockings to find that they are about 3cm longer than usual, feel looser when on and worryingly don't control my swelling so well. I am certain that my leg has not got smaller or shorter.
The manufacturer has confirmed that the correct measurements were used to make the stockings and won't offer any further support with the problem.
Has anyone else who wears custom made, flat knit, thigh high stockings experienced a similar problem?
I'm in the UK.
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Perido
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Hi PeridoYes I have experienced the same issue…..I have used the same schema number, and that has been satisfactory. Have you washed the garment prior to wearing. And did you use the previous schema number or were the measurements just resent? I have had more success when using the schema number. I think it depends on the manufacturer too.
It’s very upsetting I know. But these garments must fit correctly, or they can cause chaffing and be uncomfortable. I’ve even had to show a lymphoedema nurse just how poorly a pair fit before re issue. It only takes one measurement to be misread to create an I’ll fitting garment. My leg and short, with pant has nine different sections to the order, but when manufactured correctly offers great support.
You might need re measuring of the limb, but get it checked out with you lymphoedema service. A poor fitting garment shows the difference instantly against an older garment.
Take photographs and send them if your dealing with the manufacturer directly. In my experience 3 cms in length is too much.
Last Spring I ordered my stockings via my GP surgery; I supplied a Schema number and the order worked out well. When I ordered in the autumn I just asked the surgery to order the same as in the Spring. It might be best if I supply a Schema number every time.
I've worn the new stocking after washing but it hasn't made any difference.
I don't think my leg needs remeasuring because a stocking ordered last Spring and that I only started wearing 3 months ago is working well for me.
I've already sent photos to the manufacturer showing the new stocking is markedly longer than my previous stocking. The manufacturer just continues to state that they used the correct measurements. I asked them if the difference might be due to the yarn or tension but they won't comment.
Thank you for recognising how upsetting this sort of problem can be. Unfortunately my local lymphoedema service is poor partly due to lack of staff; it feels like me against the world at the moment and your support and empathy is much appreciated.
Don’t give up…..tell the surgery they supplied the wrong details and give the previous schema number. Unfortunately the issue may lie with the surgery and you may never get to the cause of the problem.
If you listened to the GP conversation with the LSN they suggested visiting the GP and explaining the prescription is wrong and request with schema number. In the long term this could save money for the NHS, as opposed to a deterioration in the Lymphoedema not to mention the depression and anxiety
Or get in touch for a referral to your lymphoedema service. Service from the manufacturer is taking longer too at the moment. I found it quicker during covid! Baffling.
Finally on one occasion when the garment didn’t fit…just prior to Christmas the nurses gave me off the peg stocking to wear over old garment. May assist in the short term
And as a final resort “cry”!! Short term fix. Do you wear a night time compression garment? Could you wear that over daytime garment?
Keep in touch with your progress. If I think of anything else I’ll get in touch. I’m on compression 3F and experience skin thickening, so quite advanced. Keep positive. Happy New Year.
I think I may have to use some additional measures to control my swelling; I have a wrap for my lower leg and some old ready made stockings I could use to double layer.
I'm not a quitter and will do everything I can to try and get the problem resolved.
y do make mistakes - I have the same measurements used every time and once it came back totally wrong, my clinic sent them back and they confirmed that there must have been a cliche in the system and remade them - that time perfect. Your clinic should intervene. Keep your voice being heard!
I'm not confident that my lymphoedema clinic will be able to help as it isn't functioning at all well. For example, I had to be very assertive to get an appointment in the first place and when I enquired 5 weeks later my stockings hadn't even been ordered - it ended up with me doing the order through my GP.
I've double checked with the manufacturer about the measurements and they assure me that the correct ones were used.
I've looked closely at my stocking and it is marginally longer throughout the entire length e.g. the anatomic knee is slightly higher than usual and even the foot is slightly longer than usual'; it all adds up to about 3cm in total
I've also looked at the fabric under a magnifying glass and the stitches look bigger compared to my previous stocking; I'm wondering if it's a yarn or tension issue. I told the manufacturers all this but they won't investigate the matter any further.
The manufactuerer may very well have the correct measurements but they might not have sewn it faithfully to the measurements .. I have experienced production mistakes way more than fitting and size measurement mistakes!!
So even though they have the right measurements does not mean they made it correctly.. I don't know your system but photos of garment with tape measure and be a "squeaky wheel" this is a lifetime intervention on the progression of this disease and so make sure you get them to listen to you. They need to replace your stocking .. pure and simple.
I was wondering if you had any luck with getting the right fit for your tights? The fact that a number of people responded to your post saying that they had had the same problems suggests it’s not a one-off.
I was fitted for flat-knit in August. The first pair didn’t fit but the second order was fine. I rang the clinic and said please just repeat the order as my second pair. I was so disappointed and fed-up when they arrived on Monday and were definitely not the same size. They hardly reach the top of my legs. I’m waddling around, it’s uncomfortable and embarrassing as they seem to drag your trousers down too. Occasionally, my circular-knit tights didn’t seem to be the same fit but I just put up with it as there was more give in the material.
Having seen your post, I’m seeing the clinic tomorrow and will ask them to re-order using the schema number rather than repeat measurements. Any other advice would be appreciated?
I did eventually get the right fit stocking. Something I didn't mention, because it didn't occur to me it might be significant, was the colour of the ill fitting stocking was different to what I normally have. It came to light that for this particular colour the manufacturer uses a slightly different fabric! Instead of my usual polyamide/elastane, the fabric of the ill fitting stocking also contained viscose which I feel certain had an impact on the fit as I don't think sufficient allowance was made for how the different fibre behaves when the stocking was made up. The manufacturer doesn't accept my premise on this point but my leg gives me excellent feedback! - plus my lymphoedema nurse agreed with me.
My nurse has just put in an order for a new set of stockings. She used a Schema number plus order codes for the various options I have such as flexi knee and overheight on the thigh etc and she advised me to try and intercept the order before pharmacy put it through. I managed to do this and I reminded them of the colour I want and that it must be stipulated on the order form. However pharmacy then said they didn't think they needed a Schema number and would do what they usually do, despite my protestation. I informed my nurse and she said if the order goes wrong again then she would recommend using a specialist prescription service such as Daylong or Patient Choice in future.
My recent experience wasn't the first time my stocking hasn't been made to spec, but on previous occasions it was easy to see where the mistake had occurred and the problem was resolved. It can all be very frustrating and I get a bit nervous when I receive new stockings - over the past 3 years about 50% of my orders have needed to be rectified.
It's terrible that 50% of your orders need to be rectified. Hard to understand why quality control is so poor. My latest set of tights are 2cm smaller across the waist and shorter in the leg. I feel it's a fairly widespread problem. Glad you managed to sort yours out in the end.
I went through a very depressing four months of custom back-and-forth actually five months. It got remade three times and then I gave up. It is absolutely an industry wide problem, and it absolutely is hellish, and they need to be responsible for this if it’s custom, then it’s custom. If it’s made for my body, then it should fit me. When I get a custom slip cover, it fits my couch. It’s not loose in areas. It fits the couch. Why can’t they do the same for a leg? Why can’t they make things consistently
I'm sorry you've had such a bad time and I can understand you for giving up the struggle on getting the right size but it’s terrible that we have to put up with it.
I have also just started to wear flat knit tights and they are a nightmare in terms of getting a consistent size, getting them on and washing and drying them. I have just received a fourth pair of tights. They are supposed to be the same size as the previous pair yet they are 1.5 cm shorter. My main concern is I don't understand how they are supposed to fit? Within half an hour of wearing most of the tights I've been given, the waistband is halfway down my bottom and the crotch is about a third of the way down my thigh. Surely this isn't how they are supposed to be? When you first put them on they seem OK but as soon as you move around, walk or bend down they start to ride down. I pointed this out to the clinic and got another pair that were better but then the next pair was almost as bad as the first. You also need to have fully- functioning arms, hands, shoulders and upper torso in order to get tights on and off. They are a real effort. Also, following the washing instructions isn't easy given you are not supposed to wring them but instead roll them up in a towel. My tights just about dry overnight in an airing cupboard and I am fortunate to have that otherwise they wouldn't be dry the next morning and as somebody has already pointed out unfairly we only get two pairs every 6 months.
Would it be safe to give them a short spin after handwashing?
well, I’ve heard yes, and I’ve heard no. I think the main concern is the durability of some thing in the dryer. I don’t think it’s supposed to go in there with heat. But yes, I have the exact same thing happen with me. It drives me absolutely crazy the crotch down inches almost as soon as I put them on and I’m constantly yanking them up. Why can’t they get it right and why can’t they be consistent? Don’t they have 3-D scanning technology they do they certainly do. Why can’t they use it? I think just from experience that putting them in the dryer is not going to fix your problem because they migrate down. That’s what they do. To me, the problem is in the engineering design. There needs to be silicone at different places in these things to keep them up to me, there should be silicone in the panty part on the hips. And up the sides as well as front on the back and on the thighs
I have been seen by my local lymphodema clinic for a couple of years after groin lymph removal, who up to now have measured me every six months, The last time I went, I was told I could order the next ones from the docs as I was managing it so well at the moment,(I think they just wanted to get me off the books)
Had a ‘discussion’ with the lymphodema nurse and argued how was the doc going to measure me?
I have very long legs and size 10 1/2 feet so no off the peg in womens tights will fit me!
I have same problem with my tights gradually working their way down during the day , plus after walking a lot, the feet part gets excruciatingly tight and hurts my big toes…and that is with them being measured!
Hello Charlotte, I know exactly what you mean about the doctor and the lymphoedema clinic wanting to get patients off their books. I was ricocheting between the two - each side eager for the other side’s budget to pay for the tights. As my leg is getting worse I'm currently with the clinic but their way of measuring my leg is just not helpful either. They need to say to the patient to wear the tights for at least 45 minutes walk around, bend down and just do normal movements then come back to the clinic for the nurse to see whether it fits.
Do not give up... and expect the mistakes to be on the production level.. I think even though it is a 'made to order" garment, the factory operates like a ready to wear.. and the tolerances of 1/4" variance are not ok for compression wear.. they are specified in 1/4" increments to begin with .. so you have to really advocate for yourself.. assure your measurer that the measurements are correct, document with photos the faulty garment showing in fact it is not made to the measurements, then they can advocate with you to the manufacturer to replace the garment .. Unfortunately it is production that is systematically faulty in my experience ...
Hello Perido, Years ago I was prescribed the socks. Socks I had been measured for, but everything about those socks felt wrong. I struggled to get them on with my asthma and then even when I was given some aids to get them on I still struggled as couldn't bend or contort myself far enough forward to pull on the plastic sack thing. So yeah torture trying to get them on and even more torture on the rare ocassions I managed with the help of a friend to get them on.
What was torturous is the fact that they felt so tight, my foot and my legs started to tingle at first lightly with pins and needles and then after an hour and a bit the pain was similar to that from the dentist. I also had a rash appearing where the top of the sock rim was just past my calf, plus the extra red sore ridges that developed in my skin at the ankle and mid calf. So I stopped wearing them.
The longest period of time I managed to keep them on was 2 hours and 10 minutes. Then came the tears trying to get them off as again they were so tight it actually gave me serious pain to the extent that when the sock leg bit reached my foot I swore that my foot was going to break. In fact had a neighbour not helped me to get them off, I would have probably injured myself with a knife to cut them off.
After several months, I was prescribed another set which were supposed to be not so tight, but the reality is they weren't any better. There must be some developments so that working people can manage their lymphoedema without having to resort to those torturous socks, tights and stockings.
I use a step exerciser and my rebounder at least three times a week to help keep my feet mobile and put my feet up a bit after long days at work teaching, to try and keep the swelling down. But no other treatments have been offered other than the torturous socks. Which I can not wear for 23 hours a day as twice a day I need to treat my dry skin for eczema.
Hi DeadfootMo, I'm sorry to hear about the problems you have had with your socks. I'm also a part-time teacher having been working from home since lockdown and being on my feet more has been a real problem for my legs which have been steadily getting worse. You don't mention if you have access to a lymphedema clinic. Surely they or your GP should be able to help you? Maybe wearing tights rather than socks would be better. Sorry if you've heard this before.
My go to ways to get rid of fluid is daily movement .. lymph has no pump like the heart and what moves it is the muscles contracting! My choice of movement is swimming.. it checks many boxes at once: movement, deep breathing, the water gives compression so don't have to wear compression wear.. and you are not fighting gravity, suspends the fluid instead of pocketing... it reduces stress and helps with sleep so your body can repair. I also drink a lot of Burdock root tea.. it is a lymph cleaner and diuretic .. better than the pills that just gets rid of the water.. it cleans the lymph.. if only get rid of water you are left with the inflammatory waste that the lymph's job is to get rid of.. so then your tissues are having to deal with more concentrated inflammation.... I don't care for the taste of Burdock root so I jazz it up with chai spices and hibiscus .. find anything that tastes good to you so you are happy to have it every day! Whatever spice or herb you add will have it's own benefits as well.. most are anti inflammatory !! And make sure the design of the garment fits and feels good.. you should not have to struggle to wear them..
Hello Violetta15, This fortnight is the first fortnight for a long time that my feet and my lower legs have been properly down. During the half term week, I did no teaching work at all and did a lot of resting and mandatory training, as I have just changed teaching jobs. However on the Friday of last week I went to have my 4th Covid jab, the autumn booster that is currently being pushed and after enjoying the warmth and sunshine of that Friday, this weekend, I came down with Covid. Drat. I couldn't write it, catching covid after a vaccine.
This means I have been resting and doing mandatory training for a second week. So I have not been on my feet as much at all, so to look at my feet and my lower legs this last fortnight, you would never know that I suffered from Lymphoedema. Strange isn't it, that rest can do this for you?
So, as I am trying to recover from Covid, I have been doing all the usual things to treat it, Beachams Cold and Flu drinks and paracetamol. But what I find strange about this is the fact that during the pandemic from the March of 2020 right through till the March of 2022, I worked from home for some of the time and when things eased, I worked in the classroom environment and for the entire two year period, I did not catch Covid at all. But now it is on the wane and possibly has x number of variants, I have now got it. So, one serious illness is aiding a long term medical problem to be less of an issue.
I am isolating, even though the government have altered all the rules, but considering I have asthma and Copd staying in and riding this out, is the best thing for me and if it is helping to keep my legs and feet comfortable that is fantastic.
This is like deja vu…… I have since experienced the same problems as you, but fortunately eventually five months on, actually had the leg flat knit stocking made to the correct specification. However my toe sock requirement has still NOT been fulfilled!
I actually sent a letter of complaint to the local area PALS email. It all started when after two prescriptions went through a non prescribing nurse, and consequently after 5 interventions ( Lymphoedema nurse, GP practice, local pharmacy, pharmacy preferred specialist, manufacturer) the garment was not correct and I had to sew and alter my own garment.
It simply beggars belief that we cannot get our needs fulfilled without a prescribing nurse and management of said prescription through someone like the Daylong company. There is no process at the varying GP and local pharmacy when the prescription takes this route, where chance and luck are the main drivers, and that’s if even the measurements are attached to the prescription. In my experience the problem is not with the Lymphoedema nurses but with the process……
And to add to this scenario to get in touch with the Lymphoedema nurse I have to go through x3 telephone exchanges. No direct line or email.
All of this takes it toll on our mental health, which is already dealing with the stress of the condition itself.
I’m actually thinking of writing a detailed article for the Lymphoedema society. How do we get our voices heard, and action taken to help us manage our own care?
I’m just about to get on the phone again and send another email to PALS about those toe socks…….
“Do not go gently into that good night, rage rage against the dying of the light “
Yes please do write and advocate , Lymphedema is so an under-served condition worldwide.. hardly any funding for research as more and more people survive cancer more and more are getting lymphedema .. 4 yrs ago it was 34% got lymphedema after cancer treatments now it is 40% !! Why haven't they found a way to test the lymphs in situ instead of taking them out ???? Why havent they looked at regenerative processes to help the body regenerate lymph??? why is there no doctor of the lymph system? You are under the care of physical therapist not a MD.. The only medical intervention is more surgery for transplants.. just caveman thinking from the medical industry that thinks the surgeon being on the top of the decision hierarchy is best medicine and so only surgical solutions?? You can tell I am more than angry about this life long condition I feel is a medical industry blind spot and failure. They can do better.
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